Patient Organisations

Patient organisations are committed to support education, advocacy programmes and are the link between patients suffering from particular conditions and highly ranked doctors in dermatology and venereology.
The collaboration of these two partners - the first giving their day-to-day testimony and concerns, the second providing medical knowledge and experience - is one way in which to develop understanding and reach a higher status, consciousness and clinical care.
Looking for answers to your questions?
Looking for support from people encountering the same difficulties?
The EADV has compiled a non-exhaustive list of patient organisations across Europe that can help you.

Our maingoal is to connect people with Ectodermal Dysplasia. We organize once a year a conference for adults, and once a year a special playday for children with Ectodermal Dysplasia. To show these children, that they are not the only one. It gives these children confidence. We also negotiate for buying at cooling system companies, all over the world for our members.

Founded in 1998. At present our society has 176 registered members. Our main task is to provide information for people affected by ED and to physicians, to provide medical advice through our medical advisory board. We constituted a forum for exchanging information and views, we keep a comprehensive bibliography which is provided upon request. The medical advisory board includes various specialists from fields relevant to Ectodermal Dysplasia. Our annual conference is held in different locations in Germany, usually in May, to offer as many families as possible the opportunity to attend. We are member of ACHSE, EURORDIS and orphanet.

The National Eczema Society offers support, information and advice for people with eczema and their carers. It is UK based and cannot send hard copies of its information overseas, but a range of information can be downloaded from its website.

The Gorlin Syndrome Group is organised by patients affected by Gorlin Syndrome (Nevoid Basal Cell Carcinoma Syndrome or Basal Cell Nevus Syndrome) and their families, with support from a medical advisory board.

The International Herpes Alliance (IHA) is a global association of patient support organizations and health professionals concerned about genital herpes. The organization's website provides information about regional support groups, educational material, issues and events of interest to those with genital herpes. All information has been developed using a patient-centred approach.

The Herpes Viruses Association is the UK patient support group, created by and for patients -and endorsed by doctors including members of the British Association for Sexual Health and HIV. The website includes friendly "frequently asked questions"; and a "patient information leaflet" that can be printed off the publication page. A helpline service is available on weekdays. Members receive leaflets and journals and clinics and surgeries can order the comprehensive "Herpes simplex -the Guide" for distribution to patients. Short answers to questions are answered by email.

ALSVH offers support and information to women, men and the parents of children who are diagnosed with lichen sclerosus.It aims to relieve the sense of isolation that many patients feel. Support is by the website, e-mail, letter and telephone on a one-to-one basis.

Lupus UK is the national registered charity supporting people with systemic lupus and discoid lupus and assisting those reaching diagnosis. We presently have some 6,000 members, and 30 Regional Groups who arrange medical talks, publish local newsletters, set up social occasions and organise fundraising events. Lupus UK also provides an informative national magazine with lupus articles, letters, reports and photographs.

The German Psoriasis Association was established in 1973. Today we have more than 7.000 members. In 35 regional groups, teams of volunteers organize meetings and lectures and help you with your personal problems. Additional we have more than hundred contact persons all over Germany, who are willing to let you take part of their experiences. Our office is the central advice and direction facility where you can get information as well as the phone numbers of our regional groups and contact persons in your area.

PAPAA is independently funded and aims to be a definitive source of information and educational material for people with psoriasis and psoriatic arthritis in the UK. To be a support to both patients and professionals by providing material that can be trusted (evidence based), which has been approved and contains no bias or agendas. We will be looking to provide positive advice that enables people to be involved as they move through their healthcare journey in an informed way, which is appropriate for their needs and any changing circumstances.

FESCA acts at a pan-European level to promote and achieve its objectives in alignment with the aims of the national groups it represents. As an umbrella group, FESCA supports its member organizations, while the support of individual sufferers of scleroderma remains the sole remit of national organizations.

The Irish Raynaud's & Scleroderma Society is a patient support group providing information and help to people with these conditions. The society publishes a Newsletter twice yearly and runs an annual conference in the spring.

Established for over 30 years, The Tuberous Sclerosis Association's aim is to promote awareness, research and the best management of Tuberous Sclerosis Complex, and support all affected individuals and families. The TSA employs 4 part time TSC advisers who are able to offer support.

The Vulval Pain Society (VPS) is a confidential service for women who suffer from vulval pain due to vestibulodynia and vulvodynia. It runs 3-4 workshops a year which provide a safe, informal environment for women and their partners to learn more about their condition and to receive support.

The XP Support Group is a UK charitable Trust founded in 1999 by parents of a child with XP. It aims to relieve the needs of persons with Xeroderma Pigmentosum and other related conditions and their families.